Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Monday, May 17, 2010

Feel Good Stories are Impossible to Kill

The signature wounds of the Iraq war are to the best of my knowledge traumatic brain injuries and amputations. Stories about traumatic brain injury are hard to find but it seems to me that I routinely read about amputees. The focus when dealing with amputees, especially returning veterans, is the same--prosthetic technology technology is amazing as is the will to move on with life on the part of some people. I am a sucker for these feel good stories that mix technology and with raw emotion. I am drawn to them and repulsed at the same time. Once such story that appeared on CBS news last week has stuck with me. The story was about Brendan Marrocco, a man from nearby Staten Island, N.Y and the only soldier to lose all four limbs and survive. The fact Mr. Marrocco is alive is amazing--he was not expected to live. What is not so amazing is the way his story is portrayed. In melodramatic fashion, CBS reports: "Every once in a while, something happens or we meet someone and the experience is so powerful, it forces us to stop a minute and think--and maybe readjust how we feel about our lives and the world around us". Thus begins the story by David Martin about Mr. Marrocco who is characterized as an "amazing man" who "lost all his limb fighting for his country but never gave up his American spirit". According to Martin, Mr. Marrocco has "a very good sense of balance--physical and emotional" who vows "I will not sit down and let my injuries take over my life". Mr. Marraccco's physical therapist, Luis Garcia, notes that working with a quadruple amputee is "a lot easier than I thought it would be because of his character and personality".

I have no doubt Mr. Marrocco is a strong willed man. I have no doubt he has worked hard during his rehab. I am sure he will lead a productive life. I may sound harsh but I cannot help but add so what. Think about it this way" Mr. Marrocco is 23 years old and engaged to be married. His entire adult life is ahead of him. Why should he not be looking ahead and planning to live a rich and rewarding life? Does he face daunting obstacles without limbs? You bet he does. But are those obstacle social or practical? One gets only a passing reference to the real struggles Mr. Marrocco will encounter. What I found of most interest was his comparison of missing his arms as opposed to his legs. Mr. Marrocco is quoted "Without legs you can still be independent. You know, without arms there's so much more you can't do". While I am not an amputee I can directly relate to this observation. To me, my legs are superfluous appendages. My legs do not function though they are still useful in many ways. And yet I often wonder what my life would be like if I did not have the full use of my arms. Now this is a story worth reporting about. What obstacles do people without arms or the use of their arms face in comparison to those without legs or the use of them? How does the rehab experienced differ? What sort of future do such people have? What do we get in place of these sorts of hard questions? Fluff. Mr. Marrocco met Tiger Woods! Mr. Marrocco hit the ski slopes. Again, I emphatically state so what. Why shouldn't Mr. Marrocco ski and play golf? That is what adaptive sports is all about and Mr. Marrocco is no different than many others. But this thought process is never what the mainstream media presents. Instead we get dreadful lines such as those already quoted or "After meeting Marrocco its hard to take anything in your own life for granted".

No wonder the social interaction between those with and those without a disability is so skewed. We people with a disability are not really fully human but an ever present reminder of how grateful others should be for having an ordinary life, one that does not involve paralysis or losing limbs or any other physical deficit. When I read stories such as the one in question I want to run out my door and shout "I am a human being". I do not envy Mr. Marroccco for I can well imagine the practical and social obstacles he will encounter. I can also state I do not nor did I ever want to be paralyzed. But life this is my life I will make the best of it. This is a uniquely human penchant and thus I differ not one iota from others. The difference I experience as a paralyzed man is socially constructed. The socially constructed barriers are propagated by feel good stories the mainstream media loves to publish and the public soaks up. Until this changes the social obstacles I encounter will never be ameliorated.

10 comments:

Bill, my friend, you will not likely ever find many stories about traumatic brain injury...there are no feel good happy stories there! Aside from the fact that said brain injured person is likely to have acquired physical deficits, they are also f***ed in the cognitive department. Everyone knows, there can't possibly be a happy feel good story for some poor schmuck who can't think "normally" anymore. Uber screwed. Am I bitter...oh yes.

Claire, What I want to know is what happens to all those young men that experience a traumatic brain injury? Where are they living and what is their life like? This story may not have a happy ending but it must be told. It seems to me the least we can do is provide excellent health care for wounded and disabled veterans.

I knew someone who worked in rehab with TBIs; it did seem a lot of them had a very difficult time, more than us.

You're right that not having use of your arms creates quite different challenges than use of legs. While we don't get a choice, I would rather be as I am right now (difficulty ambulating)--I had great difficulty typing, feeding myself, holding the phone, taking care of myself, etc. right after my spine surgery because it was the upper spine and because I fell. I felt far less independent than I do now. I suppose one adjusts and finds new ways, but I do think it would be more difficult. There's a lot of cultural baggage attached to not walking, however.

and yes, the TBI stories need to be told. I did see one news article years ago about a high school classmate (injured while we were in high school) that was well done. But people gossiped about her, said she was drinking and driving--not true at all and unkind!

There have been a number of stories in newspapers and online about TBI vets. They usually state that the vet is at home, living with Mom. Dad has disappeared. And there was one story about a mom quitting her job and living in a tiny apartment as close as she could get to her son's rehab center.

Frida, I do not have any first hand experience with people that have had a traumatic brain injury. I would suspect recovery is a long process and supports minimal at best.Becs, I read a long story in the LA Times a while ago about a person with a traumatic brain injury. I get suspect these people get grossly inferior care and rehab. And I agree happy endings are rare at best.

Seems like most of the stories in the news are as you describe, Bill, about amputees, or as in the case here where there is a large military medical center (soon to be the largest) stories of survivors of burns.

No doubt there are unhappy endings, few are 'cured' or fully restored. No doubt some are dissatisfied and I suspect would have no trouble getting press to express their dissatisfaction - so where are they? You question why, but seem to assume - poor care and secrecy?

I read the local newspaper everyday (have for years). I have a some contact with rehab-types and I get some of my medical care at that same military medical center. My sense is that of protection and privacy for those with TBI. 'Inferior care' is way off the mark for everyone receiving care in this system. A state-of-the-art, no, cutting edge and privately funded rehab facility is here. http://en.wikipedia.org/wiki/Center_for_the_Intrepid

With a measure of certainty I assume, all the amputees and persons who were burned suffered some head trauma from the blasts that injured them. The injured person's mental status is an important consideration of their rehab.

I have not read the book by the journalist who was severely head injured but recovered well-enough to write a book with his wife - have you? That seemed to be a happy ending, did it not? I also assume his care was/is similar to what active duty personnel receive.

Haddayr, Welcome and glad you found my blog. Cannot say as I blame you for being tired, being an ever present reminder is tiresome.

Barbara, I have no doubt cutting edge and top notch rehab for veterans exists. I also think the opposite is true--plenty of stories have appeared in the news that indicate post war care is problematic--especially as it relates to post traumatic stress. Any care that is substandard for a veteran is in my estimation an outrage and indictment on our society. Ugh, I wish we could move away from the notion of "cure" and concepts of restoration of function. This is so entrenched in a medical model of disability. Of course rehab is needed but we need to rehab the body, mind and prepare people for the dramatic social changes that they will experience.Thanks for your comments. I truly appreciate your views.